Category Archives: Ideas

Palace of Care – Gotta Work

Posted on by
Reply
Photo by Kyle Hanson on Unsplash

He loved to work. He said it made him happy. He said it took his mind away from what he was going through with his illness. The doctor had given him bad news. Time was going to be short, possibly only weeks left to live. He still wanted to work, he had asked his boss to bring in a laptop, and other work equipment. He said he wouldn’t do too much work, and that if he was too tired he would stop.

His wife looked doubtful and talked about trying to spend all her time with him, but he chose to work even when she was there. This was something that she couldn’t bear to watch. It had happened too often. She wanted me to tell him to stop working. I couldn’t tell this dying man not to do something that would make him happy. I tried to negotiate a compromise between them.

“I’m not here to tell you what to do. You’ve been told you might only have weeks left to live. How you use your time is up to you. I can’t make those decisions for you. You need to think about how you want to spend whatever time and energy you have left. I’m here to take away whatever stress I can. I don’t want you two arguing at this stage of your relationship. Why don’t we try to balance things out more? Your wife needs to take a break, maybe go home for a few hours a day. Why don’t you work when she has gone out? When she comes back, then it’s time to stop working. Do you both think that will work? My staff and I will keep an eye on you, we don’t want you overdoing it, and if it looks like you are exhausting yourself we will tell you to work less. Thank you both for agreeing to try this out. I will be checking in with you both, to see how much breaks/work you both have/do.”

I wasn’t sure how well it would go. It is hard not to be yourself after a lifetime of being in the role. People stay true to themselves right to the end. That being said just in the past days he had agreed to be baptised into his wife’s life-long religion. A huge change for a man who had been an atheist over his adulthood. I would try to keep an open mind and see what happened next.

Palace of Care – Nice To Meet You

Posted on by
Reply
Photo by Tiago Fioreze on Unsplash

Hi, nice to finally meet you too, Doctor.

No need to apologise for the colours. My wife has always loved bright colours. When she couldn’t walk around anymore I planted extra plants to brighten up her views. From our bed, she could see all the different flowers that I had planted outside the window. She liked to sit in our living room and from her wheelchair, she could see all of the flowering winter plants I had planted for her. The colours of your scrubs are very welcome here.

How did we first meet? After university, I went to work for a large steel company. All the company workers and their families lived in the company complex. It was like a city, 50,000 people lived there. In this area, there were 45km of railway lines. I lived in one of the buildings for single males, in a serviced apartment. We were well looked after. We didn’t have to cook, all meals were provided in the company dining halls. I liked to play the card game Bridge and I joined the company tournament. During one of the first matches, I beat my opponent by 25-0. If you know Bridge that is the highest score possible. I must have impressed her with my Bridge skills or maybe it was my long hair. Whatever the reason, my future wife started to ask me out.

My wife’s family worked for a subsidiary of the company. She was born in the city, went to the company school, through university and then was employed by the company as well. We had good times working there, but we wanted something different for our children, which is why we moved to New Zealand.

My wife is amazing, she’s so strong and has lived with her cancer for over seven years. She’s had so many treatments and some of them were so hard to go through but she was so determined to stay with us. Things have been tough at times but we have been happy. During these years our eldest child was married and now is a parent of our three beautiful grandchildren. Last night I missed out on a party. The family were singing my wife’s favourite songs. They were using a banana and a hairbrush as microphones. They had a good time and were all laughing so much.

Thank you for your time as well, and it was a pleasure for me to share our story. Good memories.

Yes, my hair is naturally wavy. I decided to grow it long again, while I still can, just like it was when we first met each other.

Thanks again for all your help and care. See you later.

Palace of Care – Connections

Posted on by
Reply
Photo by John Barkiple on Unsplash

This afternoon I lectured on Resilient Leadership at a university executive MBA course. I spoke for 50 minutes on the leadership journey I had been on over the past nine years since becoming Medical Director. I talked about the ups and downs I have had to work through and the importance of leadership and resilience. I shared several stories as real-life examples of doing the right thing. Not the easy thing, but the right thing can be very hard at times. Declaring that you are patient-centred cannot just be a fashionable but tokenistic slogan, you have to mean it. You have to prove that you support patients’ right to choose, not just in terms of assisted dying, but other treatments and procedures, which may be invasive or have burdensome side effects. Patients and their families may need our advocacy, and support with decision making.

I allowed for 10 minutes of question time at the end and some thoughtful questions were asked. As I was wrapping up the hour-long session one of the audience members waved and caught my attention. I thought he wanted to ask a question. He didn’t have a question but instead wanted to thank our hospice for providing end-of-life care for his late brother. He said that his mother was especially grateful for the care received. A humbling moment and a reminder that the world can be a small place in which a lot of people are connected in various, often unexpected, ways.

So ends Work Day 20. I think I’ll take the day off tomorrow.

I think therefore I am? – On Moral Distress

Posted on by
Reply
Photo by Martin Sanchez on Unsplash

I would find it too morally distressing to send one of my dying patients out of my hospice to the other side of the city to have their assisted death. I wonder if other hospice and palliative care team members share similar feelings. I know definitely that some members of other teams have no qualms about discharging their patients home for assisted death. What about patients who don’t have a home of their own, or who are unable to be home for their assisted death? Where can they go? Unfortunately, the answer from other hospice teams has been, “Anywhere but here.” This is a situation known as a forced transfer, something I have encountered many times in the past almost three years since assisted dying became legal in New Zealand, and we started hosting assisted deaths.

Some of these team members also have no qualms about sending a patient, known to be in their last hours of life before an assisted death, into rush hour traffic. Maybe the same team members have made it clear to the patient and family what their personal views are about the choice the patient has made. The dying person on the receiving end may feel judged and even more vulnerable. What happened to the care part of palliative care? Everyone is entitled to their opinions but when you are at work patients deserve to be met with staff members’ best professional selves, not their strongest personal opinions. For some team members even talking about assisted dying makes them feel uncomfortable, and they share this discomfort with the patients they are supposed to be caring for. Do the staff feel uncomfortable? What about the person who is dying? Can we please treat people with compassion and humanity? How would you feel if you were on the other side of the bed?

Palace of Care – Shared Decision Making

Posted on by
Reply
Photo by Florian Schmetz on Unsplash

With advances in medical technology and treatments, there may be a lot of management options available. Whether any treatment is the right thing to do for the individual patient in front of you needs to be carefully considered. It may be easier to do something, rather than explaining why not doing something is the better option. It is best if a person can take part in the decision making but they don’t always have the opportunity as they may be too unwell.

He’d had many procedures and treatments over the past months. Some had been beneficial, others not so much, all of them painful. He was becoming better at saying, “No.” If it would improve his quality of life he might consider it, but if not he couldn’t see the point. He was already in a lot of pain. He couldn’t keep down his food let alone any medications. They didn’t work anyway. Maybe he had been too subtle with the doctors. They all seemed willing to help and had consulted other colleagues in the hospital to access further investigations. He wasn’t sure if he wanted them. There had been so many this year, and each of the results had indicated that everything was getting worse. He didn’t need it to be confirmed in a written report, he felt it in his bones, the deep fatigue that gnawed at him. Reducing him more each day.

Maybe tomorrow he would tell them how he truly felt. If he could get a word in…

I think therefore I am? – White Rabbits

Posted on by
Reply
Photo by engin akyurt on Unsplash

New month, new day, new streak of writing. The past month was rough, with child-borne viral illnesses having hit hard for too many weeks. Finished off with an unexpected death in the family that caught me by surprise, despite almost 17 years of full-time palliative care work. Being on the other side of the bed is so different.

I’ve been thinking about my why. Previously it was, “To make the world a better place for dying people.” Vague, dreamy, too undefined to be obtainable? What were the outcome measures? The Key Performance Indicators. Could it be morphed into a Just Cause as per Simon Sinek’s The Infinite Game?

I’ve often thought about Palliative Care as being the best sort of care – holistic, whole-person, patient-centred and quality-of-life-focused. Why do we save the best for last? Can we create a world in which people can have this sort of care from pre-cradle to post-grave? I have been saddened to hear from patients and their family members that for some people the short weeks they spent in our inpatient unit were some of the best weeks in their lives. I heard this about a patient in his eighties, the rest of his life must’ve been rough for the three weeks in hospice to be some of the best of his long life. What suffering did he endure during his life? What traumas? A lady in her forties told us that the weeks that she spent in our inpatient unit were also some of her best weeks. She had never felt so cared for, in her whole life. The time after she had received her terminal diagnosis was the best part of her marriage. Her husband stopped drinking alcohol to look after her. That’s not right. What can be done about those situations?

Can suffering be decreased throughout the lifespan? Not just at the very end. Can quality of life be improved throughout life, rather than just during dying and death? Instead of a sickness approach to healthcare, why not a wellbeing approach? A lot to think about and more to write about.

Happy Birthday Uncle Arthur.

I think therefore I am? – Mother’s Day

Posted on by
Reply
Photo by guille pozzi on Unsplash

Happy Mother’s Day to all mothers out there. A day when we celebrate one who may be one of the most important people in our world. This can be a happy occasion but it can also bring sad memories to those who no longer have a mother. A time when the grief is stirred up a bit more than usual. Memories of the loss of a parent churn from deep inside us. For some, the loss is all too recent, all too raw. You didn’t want her to suffer one minute more but you missed her even before she had died.

She wasn’t her usual self any more. She couldn’t be there as she always had been countless times before. It was hard to see someone so strong become so frail. She had always been of slim build but the weight loss was too difficult to bear witness to. Her severe fatigue made you wish you could gift her some of your energy, but you knew she would never take it. She had trouble being the one who needed care.

She always served her customers well. Put them at ease with her gentle words and friendly smile. She enjoyed seeing the children grow up, just like her children had. From needing everything done to full independence. They had all become adults and parents themselves but she couldn’t help still wanting to take care of them. Nothing changed at the end of her life, she took care of her children and her grandchildren. She wanted to do her best for them, as she always had.

Even after I am gone.
I will still be with you.
A tiny bit of me will live on.
Inside of you my child.
Know that you are loved.

Palace of Care – Timing

Posted on by
Reply
Photo by Taras Chernus on Unsplash

Where do you think you are at?

I’m so tired, it’s no good.

What did the hospital doctors tell you?

It was always bad news. Every time they came in there was more bad news.

One thing, after the other. It would be hard to keep up.

Yeah, it was.

Did they talk about how much time you had left?

No. They wouldn’t tell us.

They fobbed you off?

Yeah.

Would you like to know how much time you have left?

Yeah, please.

How much time do you think you have left?

Not much, I feel so weak. Days?

I think you’re probably right, maybe only days, but it could be much faster if the changes continue. You had a fever last night.

My legs and tummy are swollen too. The doctors talked about something called albumin being low.

Albumin can be a marker of how well a person is, normal levels are 35, yours is much lower.

I feel better since I came over to hospice. Being able to go outside is so good, I hadn’t been outside of the hospital for two months.

Is there anything else we can help you with?

Do you guys have any Coke, in a can?

Sure, we’ll arrange for some Coke for you. Ice?

Yes please.

Just let us know if we can help you with anything else. See you later.

Thanks, see you.

Palace of Care – Special Request

Posted on by
Reply
Photo by Efe Kurnaz on Unsplash

Things keep on changing every day.

Nod.

Do you know what is going on?

Yes, she is getting worse.

Yes, the cancer is getting to be too much for her. It’s made her fall asleep.

Yes, the other doctor told us yesterday.

Do you guys usually go to church?

Yes doctor, but she hasn’t been for a long time because she’s been so sick.

Would you like a priest to come over.?

Yes, doctor, we have arranged for our pastor to come over.

Will he come with church members?

Yes. Doctor, can we please have a bigger room?

I’ll see what we can do. I’ll have to talk to some of my colleagues. I’ll do what I can.

Okay.

The things that have been making her uncomfortable are going to get worse. Her breathing is going to change. She’s going to get more sleepy. She doesn’t have much time left, she is dying.

Yes, Doctor, can we please have a bigger room? We are a big family and there are a lot of us who want to come in. Do you think you can help us doctor, please.

I will get onto it right away. In the meantime I’m going to review all of her medications. We want her as comfortable as possible. She’s had too much pain causing suffering.

Thank you Doctor.

You all take care.

It took a bit of negotiation and flexibility but the patient and family were moved into one of our bigger rooms. This allowed three generations of the family to spend the afternoon together with our patient. She died short hours later in the presence of her family.

Palace of Care – Three Wishes

Posted on by
Reply
Photo by Vladyslav Tobolenko on Unsplash

They had told him time was short. He had asked them how long they meant. He couldn’t recall them giving him a clear answer. He set himself three goals before leaving hospital. Grass underfoot, the taste of green apple and to eat an ice-block.

The ice-block would be easy, we had plenty of ice-blocks as our patients may have swallowing difficulties and icy treats can be most welcome. Plain old lemonade ice-blocks can be most refreshing.

I asked if our kitchen had green apples. No – this was not something that patients usually ate. Too hard to chew for some people and too sour for most people. The kitchen usually was stocked with canned fruit, stuff that would not perish. I asked the universe for green apples, the universe provided me with five of the best. (A quick trip to the local convenience store was made. Sorry, we just sold our last green apples to another customer. A longer trip to a local fruit and vegetable store was successful. Five bright green Granny Smith apples were chosen. 10 minutes spent travelling in a hospice EV. )

I dropped off four apples to our kitchen staff.

“Could you make an icy treat with these apples?”

“Sure, I’ll blend them with ice.”

I went off to be the teacher’s pet. Giving our patient the fifth apple I left the room as he was busy with another staff member. I walked down the corridor and the chef was holding a glass jar that contained bright green icy slush. I hadn’t expected this to be prepared so quickly. I presented our patient with the drink. As he sucked on the straw the look on his face was pure pleasure, “Ahh, that’s good.” He hadn’t been allowed to eat and drink for a long time in hospital.

Grass underfoot was going to be a bit more challenging. His mobility had worsened as he had become weaker. Stuck in bed for weeks. Stuck inside the hospital walls, breathing conditioned air. His only sunlight exposure was through a window that could not be opened. The first day he was too tired to do anything. Could he be hoisted into a wheelchair? Would we have to push his bed out into our courtyard, over to the lawn? Could he sit up in bed? Or could we bring a piece of turf into his room? Maybe a combination of all three wishes, an icy green apple and grass slushy? Maybe not. Thanks to the kind efforts of our physiotherapist (not terrorist) and our nursing staff a short trip in a wheelchair was enabled.

Out into the sunlight, a gentle breeze on his face wheeled out towards a fine collection of chlorophyll. Slippers off. Feet resting on lawny goodness. A man communing with nature. He lay back in a reclined position, his head propped up by a soft pillow. A satisfied smile in his eyes and mouth. Contented bliss. A momentary escape from hell. A relaxing dose of normality. A simple pleasure.

Missions Accomplished team!